Focus on Traumatic Brain Injury Research

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Sharing TBI Data 

NINDS strongly encourages researchers who receive funding from the Institute to use these common data elements (CDEs) in their clinical research.

• TBI specific CDEs can be found at: NINDS CDE for Traumatic Brain Injury
• A comprehensive list of CDEs from across NIH can be found at the National Library of Medicine (NLM)’s NIH CDE repository
• Utilizations of CDEs for reporting both clinical and preclinical findings is a good practice that will help researchers in compliance with data sharing tools in the future.
• NIH will implement the Data Management and Sharing Policy in 2023.

For more information, please visit:

• NIH Scientific Data Sharing​​​​ 
• NINDS Data Sharing: Information for Applicants and Awardees

Data Sharing repositories supported by NINDS
 

1. Clinical data: FITBIR  (FITBIR Data Sharing Policy)​​​​​​
   
   The Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System is an extensible, scalable informatics platform for TBI relevant data (medical imaging, clinical assessment, environmental and behavioral history, etc.) and for all data types (text, numeric, image, time series, etc.). FITBIR was developed to share data across the entire TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms. Sharing data, methodologies, and associated tools, rather than summaries or interpretations of this information, can accelerate research progress by allowing re-analysis of data, as well as re-aggregation, integration, and rigorous comparison with other data, tools, and methods. This community-wide sharing requires common data definitions and standards, as well as comprehensive and coherent informatics approaches.  
   
   The FITBIR Informatics System is a database developed by the Department of Defense and National Institutes of Health to share data, associated tools and methodologies. NINDS has specific FITBIR requirements for larger Clinical Research studies.
    
2. Preclinical Data: ODC-TBI
   In partnership with the Department of Defense (DoD), the National Institute of Neurological Diseases and Stroke (NINDS) has led efforts to develop standards for preclinical research data in TBI. Experts in preclinical TBI research from academia were invited to participate in TBI Preclinical Working Groups with the goal of developing TBI common data elements (CDEs) for preclinical research and to establish guidance for the utilization of preclinical CDEs in TBI research. The outcomes of these working groups have been reported by Smith et al. 2015 and LaPlaca et al. 2021. NINDS is continuing to lead these efforts for preclinical CDE development and refinement in partnership with the DoD and Veterans Affairs (VA) through the VA-funded interagency resource center PRECISE-TBI.
   
   The primary objective for developing preclinical CDEs is to produce a well-defined lexicon for describing and reporting how preclinical data are collected with the goal of enhancing rigor, reproducibility and transparency in study performance. The goal of CDEs is to develop a tool to improve standardization of data collection such that experimental details and procedures are reported in a standard transparent manner that allows for rigor and reproducibility. Additionally, it is important for data to be collected, reported and curated in a standardized manner and format that will allow TBI researchers to share data across sites and reuse data for either secondary analyses or big data analyses.
   
   Preclinical TBI researchers are referred to utilize the interagency resource center known as PRE Clinical Interagency reSearch resourcE-TBI (PRECISE-TBI) center and to house their data in the Open Data Commons – Traumatic Brain Injury (ODC-TBI) repository.